Saturday, November 20, 2010

One Mother's Story ~ the "ultimate AOT story" of one mother’s struggle to get her child help!

What would you do if your child needed medical help and year after year nothing ever changed? This is the "ultimate story" of one mother’s struggle to get her child help! This story illustrates why Kentucky needs its Mental Health Law revised.

I want to personally thank this mother for sharing her heartbreaking story – and for her courage!

I invite you to imagine how much money could have been saved if Tim had been receiving assisted outpatient treatment (AOT), these past 35 years? Imagine your son being transported to the hospital 32 times in handcuffs, if he had re-occurring heart disease instead of a "brain" disease?

One Mother's Story

by: Faye Morton

November 16, 2010

In June of 1975, I was 38, a working mother and wife. Living in Kentucky, my husband and I were busy raising our three children. Our oldest, a son, was 20 and serving in the Army. Tim, our middle child, was nearly 18, had just graduated from high school and planned to attend the local community college in the fall to study architectural drafting. Our youngest, a daughter, had just finished 7th grade. I was energetic and had a full client list in my own hair salon, a home-based business. My husband was also self-employed and owned a local barber shop.

Tim had moved into an apartment with a few of the neighbor boys that he had been friends with throughout his childhood. They had spent summers riding bikes, building forts and scouting together as children and as teenagers, gathered at each other’s homes playing cards, table tennis and basketball. Tim was above average in height, being 6’-3’’, and slim built. A nice looking young man, Tim had a sense of humor that reflected his sensitivity and respect of others.

Tim called late one night and asked us to come get him, saying that he was afraid and in trouble; it was unexpected and alarming. After bringing Tim home, the three of us sat at the kitchen table and talked into the early hours of the next day.

Tim was admitted to the hospital the next morning, for 6 weeks, followed shortly afterwards by another hospitalization of 4 weeks. He was given several prescriptions to alleviate his symptoms of paranoia and the voices he heard. He was released with instructions to attend school part time, and work part time, to keep active physically and take his medication. He was to see a therapist once a week.

Never having any exposure to brain disease and the effects of psychosis, my husband and I had to absorb many new concepts and develop new expectations for success for Tim. We learned early that the doctors were convinced medicine would correct the damage to his brain and prevent it in the future.

Since Tim did not think he had a disease that needed treatment, he rarely took his medications. He was able to communicate and get a job, but he could not hold one for long - his paranoia and the voices he heard would interfere. He could keep his behavior together for short periods of time, making it appear that he did not have any symptoms. He tried to live at home, but that did not work because of the conflicts that would come from his paranoia and delusions.

By the end of 1996, at age 39, Tim had been living with paranoid schizophrenia, basically untreated, for 21 years. He had never attended college or held a job for any length of time. I had reached the age of 60 and still worked full time; my husband and I had become grandparents (our daughter’s children) and we enjoyed time spent with our grandchildren. Our oldest son had been diagnosed with cerebral palsy and lived in a local boarding house for veterans. He also had a brain disease, showing symptoms of mania and impulsive/compulsive behavior with some delusional thoughts. But unlike Tim  he recognized the symptoms as a disease, and was willing to take medication.

Tim had been hospitalized multiple times, and no longer would take medicine unless he was in the hospital. He would accept treatment while in the hospital, because he was told that if he took the medicine, he would be released. Tim did not connect the reduction of his symptoms with compliance with treatment. He still was not aware that he had a disease. Tim spent a great deal of time walking the streets. He was a familiar sight on the downtown sidewalks, his long legs making short work of the city blocks. He had developed an addiction to cigarettes, and a taste for soft drinks. Tim did not drink alcohol, smoke pot or misuse any type of drug. He was very tan and slim and looked healthy and fit. However, a short conversation would dispel that notion because his delusions, now quite fixed, would enter into his speech quickly, and his thinness was not because of care for his diet, but because he ate very little due to his paranoia, and would not keep food in his apartment.

When not in the hospital, Tim was offered treatment at the local outpatient facility, but had to find his way there, on the appointed day and time. He would go to the office, but most of the time would not accept treatment. Many caring social workers, psychologists and psychiatrists tried to help Tim, but they were limited by what they were allowed to do by the mental health laws in Kentucky.

During this time, an administrative judge explained to me that he could clearly see that Tim was not stable enough to live unassisted. However, he had no choice but to discharge him from the hospital because the doctor had indicated that he was not a threat to himself or others and the law would not allow the judge to keep him hospitalized against his will. By this time he had been hospitalized by court order eleven times.

Now, in 2010, I am 74, retired and living with my husband in the same house we’ve lived in for the majority of our married life. Our oldest son, age 55, is now living in a veteran’s long-term care facility, his cerebral palsy having progressed to where he is confined to a wheelchair. We visit him weekly, laundering his clothes for him and staying informed of his treatment plan. I’ve always been struck by the fact that our oldest son recognized his symptoms as a disease, and was willing to take medication. Our grandchildren are in college and keep in touch through Facebook.

Tim, now 53, has been in a new program of mobile outreach services that began in 2007. His assigned social worker visits him at his apartment and helps him with his errands to keep him living independently. Up until this time, I had provided his safety net to make sure he had some food, clothes and shoes. Years ago he was homeless and walked/hitchhiked to Buffalo, New York during a harsh winter storm. Since then, I have worked to ensure that Jim would not be homeless again, helping him obtain assistance for housing and food. Many times, due to his paranoia and voices, he would be dropped from programs and I would follow up to get him reinstated, working through red tape and a bureaucracy that allowed the most vulnerable of our citizens to be treated as though they were a subclass and worthless.

The mobile outreach program helps to ease the burden of caring for Tim, but still has not changed the treatment he receives for the disease he has lived with for 35 years. Although he has been hospitalized by court order through mental health warrant or petition (MIW) 32 times, he has never received treatment for any extended period of time. The last time Tim was hospitalized and released I noticed that he was not any less psychotic and it shortly became apparent that he had refused the recommended treatment while in the hospital. Although Tim has never been violent or arrested for any crime, of the 32 times he was picked up by a court order to be taken to the hospital, only the last time was he allowed to ride in the officer’s car without being handcuffed.

This past summer Tim was assaulted by a gang of youths and urged by the police to press charges; Tim was concerned that he would not be a credible witness because of his many “arrests”. He mistakenly believes that he has a criminal record because he has been handcuffed and taken to the hospital on so many occasions.

After 35 years of psychosis, Tim’s brain has been damaged to the point that he cannot mask his illness, so he is ostracized and victimized in his community. If Tim could have Assisted Outpatient Treatment, ensuring a therapeutic time of treatment on the appropriate medications, it could be possible to reverse some of the damage that has occurred to his brain, and he could benefit by improved brain function. The years of malnourishment and neglect are taking their toll as he is rapidly losing weight; his jeans held up by a belt fastened in the tightest notch, but still hanging on him; his teeth broken off and decayed, his mouth ravaged by too many cigarettes and sodas. He no longer can walk the miles he used to. If he does try, his breathing is labored, and racked with coughing.

The way our laws are written in Kentucky, legally, Tim can continue in this state of decline until he dies. The law says he can refuse treatment, so we have to stand by and watch him die by starvation and self neglect.

Tim still does not know that he has an illness, and he does not understand the consequences of refusing treatment. With the current legal system, how many other mothers of children diagnosed today, will spend the next 35 years of their lives watching while their loved one slowly dies?

Please work with me to Change Mental Health Laws in Kentucky!

Click here:
to view Faye's updated story about her son called: 'Personally speaking' ... published in 2012


  1. This story is amazing to read… it is so sad, yet so powerful – what a statement!

    THANK YOU FOR SHARING AND BEING SO OPEN! I would guess you are not the only parent with a story like this... perhaps someone else will be empowered by your voice and share their own.

    I find it very concerning that starvation and self neglect are not enough of a ‘red flag’ to get someone the treatment that they need!

  2. Your story is compelling and inspiring, Faye. Thank you for sharing it with others. I, too, have a handsome young son who currently does not recognize his illness. I worry about where he will end up someday - we in TN do not have an AOT law but I am eternally optimistic that will change soon. God bless you. Karen

  3. Dear Faye,
    Thank you so much for CARING enough to share your story. Over and over people are denied basic care when their brain does not work well enough to know they need that care.
    I wish every person in this country would stop and think, "If I or my loved one's brain could not recognize the need for care, would I want to live on the street, die, or worse - be left to endanger others?"

    Thank you.

  4. I would be very angry in a situation such as this. I'd try to find someone who could help me fight the injustice of it.
    It's not the childs fault. Why should they be treated as if they're criminals!
    A criminal makes a choice to lead a life filled with violence and crime. A person with a brain disease doesn't choose this. They only want to live a normal, happy, productive life filled with love.
    We need to try and help make this possible.

  5. Thank you for sharing your incredible story with so many people

  6. Has your son ever been involuntarily admitted. Meaning has he ever been signed into a facility on a parent's signature? Reason I asked is that treatment usually is better if one is court ordered or a family member having them placed into a hospital that he could not get out until fully 100 percent capable of taking care of himself. I do Thank You for your courage to speak out. Having have worked in the mental illness field a few years back I got to see a lot of abused or ill-treatment of others that hurts more than they help at times. I truly believe God has given His meds instead of Synthetics to help but many again are not allowed the treatment that may help them due to our insane laws in some states. I buried my 27 year old about 3 months ago so I know pain with children. God Bless You and Yours. I will speak to others about the law you are concerned with.

  7. Faye, you are a valiant mother. I thought that my heart would burst as I read your account of Jim and his mental illness.

    I will never understand the inhumanity of allowing an individual with a biological brain disorder to live under a bridge, feeze to death or die of malnutrition. Courted ordered outpatient treatment and mandated medication must become the norm.

    From the time of my brother's diagnosis of manic depression at age 29 until his death at 51, my widowed mother and I persevered. We were blessed to have experienced his well times among the chaos.

    Yours has been and continues to be a rough road. Your willingness to share will rally mental health advocates to stand firm for what is right. I am proud to stand with you as a mental health advocate.

  8. Mama Faye,
    Thank you for boldly sharing your story! I know that as a parent we only want what is best for our children. I know your story will help
    others who are facing similar situations. As a mental health advocate I stand with you. God bless you and give you and your family peace.

  9. What's the difference?

    When my father was 40 years old he suffered 4 strokes and since his mental faculty was considered that of a ten year old I went to court and received guardianship and power of attorney to get my father the health care he needed and get him a place to live that would take care of him.
    At first he refused I was able to hospitalize him at bellvue because he was a danger to himself.
    The court backed me up. He was given forced treatment and he came around I was able to care for him. He became compliant and I found and adult care home he stayed at to live his life with people around him and safe until he passed away 11 years later.

    At the tender age of 10 my son was diagnosed with paranoid dillusions and possible borderline tendencies I was able to get him treatment and medicine to help him and he was doing well and thriving then the blow came when he became 18 a therapist told him if he did not want to be treated he did not have too and this has started my nightmare. I really don't understand why with my Dad's case the court was behind me but with my son's illness it is his choice it does not make sense to me.
    He is not emotionally able or mentally able to make those decisions like my father but yet the courts will not help me can someone please tell me what is the difference?

    Roxanne Mac lean

  10. I don't think I have a read a more powerful or articulate account of how Kentucky's mental health laws fail our most vulnerable citizens.

  11. Thank you Faye for sharing your story. It brought tears to my eyes and a pain in my heart. I pray that enough Lawyers and advocates will be moved to help change the laws that so desperately need amending. The laws were written for our protection not for our self destruction. I truly believe we have a class action law suit against a law that refuses to help the helpless. How insane is a law that allows those that are clearly delusional and psychotic, to choose treatment or not. They do not understand the ramifications of an untreated mental illness. How many people in the state of KY in the last 40 years, have had their life destroyed, because they did not receive medical treatment for their mental illness, because of the law as it is written? I beg all the families affected by this to stand up, be counted and fight this law with a class action. Since this is a state by state law, I pray everyone in their own states to do the same. I will stand with you all!

  12. Faye,this shows what perseverance and courage you have showed in trying to help your son. To have a child with a physical disability is taxing enough, but to have another child with a serious mental disability is almost more than a mother can bear,especially when he can't be made to accept the treatment that would help him and he so desperately needs. I've seen my parents deal all their adult lives with my two sisters with schizophrenia. Thanksfully my sisters are compliant with treatment, but it is still a rough road for a parent. I am doing what I can to push AOT laws for Kentucky. This is the subject of my current thesis, and I hope to have your imput, along with other parents of children with SMI. We have all worked together to advocate for a new mental health hospital here in Kentucky. Now we can work together to advocate for a new AOT law in our state.

  13. It's amazing how your story with your child is almost the same as my daughter. It always amazes me the laws work against the mental ill. The laws were changed in the 70's to empty the mental hospitals but nothing was put in place of that treatment. Laws were put in place to protect mentally ill but did nothing to provide them with care. Let's get these laws change.

  14. I am literally shaking this story could be about my son Jerad age 30 whom lives in Lexington, Ky at this time. Not only does the details sound so eerily famaliar your motherly feelings are what I go through daily. The differnce is he is now in state guardianship while I a widowed mother lives 5 hours away. Good Bless all the mother's out there but most importantly the madness our children endure daily.

  15. I have been hearing this same story over and over again for years. We need to "Occupy" the "Occupy" movement. The 4% of adults with severe mental illness do not seem to be represented by this movement. Once again, they are left out in the cold. For some that is a literal statement.

    I urge everyone to go to an "Occupy" event near you and educate the people there about the issues. You will be heard. People are listening, but they can't change what they don't understand.

    I spend most of my efforts advocating for the repeal of the Medicaid Institutes for Mental Diseases (IMD) Exclusion. If you click on my name, you'll be directed to the Paul's Legacy Project website. However, I think enacting, improving, and enforcing AOT laws goes hand in hand with repealing the Medicaid IMD Exclusion because it would help people who are Medicaid eligible to receive long-term in-patient treatments when appropriate, then the AOT laws could help them when they are ready to be released into the community.

    Redefining civil commitment laws to include "gravely disabled" is also important. In addition, There has to be a whole, system wide, clean up of the admission and discharge/step down process. The discharge/step-down process needs to include well defined release/step-down criteria, transition planning, and follow up. Without these changes, we will continue to hear more of these stories.

  16. Faye, I wrote you a message about my son Jerad last June. At that time he lived in a home by the name of Messner's in Lexington. I am glad to report he is now back in Murray, KY close to family. But once again he has put himself into Western State Hospital due to his delusions and depression. No matter what the outcome I am so happy he is away from Messner's Home. He just can't seem to stay on his meds. AOT would help this tremendously. God Bless you and your family.

  17. Hello Faye, Your story has touched my heart and tears are now falling; im so sorry to hear about the situation i too can relate, My name is Urissa B. and i have a sister Carolyn S. Jones in Ky jail we are from texas and in dec 2011 she committed an crime and she was diagnosied with schizophrenia a couple of months ago. They are throwing the book at my sister.. see we have mental illness that runs in our family and in Nov 2011 we noticed an change in my sister when she came to visit for thanksgivings from Ny; her normal weight is 120lbs and when she opened the door my mom had to run and hide and cry because she weighed 80lbs we went to get her checked out and all her vitals were good.
    So when she went back home to visit my conviced her to come back home to stay but on the way to Texas she just couldnt make her connection flights so i flew went to Az (thats were she got stuck) and picked her up at the hospital and insisted someone see her because she was too underweight. When i seen her she had slipped off so far that she looked like a totally different person. i spoke with the doctors and they quickly knew she had a mental disorder because they found no drugs in her system. While there she wouldnt eat unless i was there and said she thought they were poisining her and she was scared she was hearing the devil in her and countless other things like she thought she was dying of an diseases and i got her checked out and all negitive; the doctor only let her go in my care and recommended her go to an doctor in texas ASAP... since she was on a "No fly list" i had to drive straight from Az to Texas and it was very difficult.. however, she was in Tx for 30mins and became very violent so we called the police and the ambulance came and she attempted to jump out several times however the hospital that she was at for less than 24 hours let her go EVENTHOUGH we provided paperwork from the doctor in Az and you can read the story on YOUTUBE and she on a highspeed car chase for hours to where they had to stop her with spike strips and her wrecking. My sister prior to this owns her own business, graduated from NYU, very pleasent sweet girl and hasnt even been to the principle office in her life and never been to jail, done drugs, and never smokes cigs, and while in jail she started smoking cigs and they are just treating her WRONG. Im sorry to take up your time but i really wanted to get this off my chest and even if it takes the rest of my life i will dedicate my like to changing the laws for the mentally ill. I would really appriciate it if anyone had any advice. My email addres

    Thank you

    1. Dear Anonymous. If you feel so inclined, please visit facebook page MASC - Mothers Against Solitary Confinement. You will gain a wealth of both support and information from the amazing parent-advocate/activists in this group. So very sorry to hear about your dear sister. My best to you both. Donna -

  18. Thanks for sharing! I have a 33 year old beautiful daughter that I know has paranoia. She is working for state government, as of now, but I'm afraid any day that she will get her notice. I get so many texts from her during the day and I try to keep her calm. She has been going to a psychologist in Lexington, but threatens to quit because she says she has nothing wrong with her. I've emailed the psychologist, since she is 33 years old, I'm sure everything is confidential. I've begged her to help her..she has an appointment next week, my husband and I are trying to persuade her to keep going. It's unbelievable that she was once a pharmaceutical sales Rep, owned her own home at age 25, had many friends, and now she has nothing. If anyone has any advice as to where I can find help for her I would certainly appreciate it. Thanks for listening!